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Because My Daughter Will Never Have To Go Through What I Went Through

March 7, 2018

by Ellyn Davidson

Photo of Ellyn with her daughter

Ellyn and Lacey

“Your daughter will never go through what you went through.”

That simple statement had a profound impact on me. Words I will never forget and words which fuel my passion and energy into an organization that has changed the face of hereditary cancer.

I was 36 when I was diagnosed with Stage II Breast Cancer. I was a mom of three children—Lacey, 7, Brett, 5, and Seth, 1—with a thriving career. Cancer didn’t care about me or my family.

I was thrust, like many of you, into the world of cancer treatment—doctor’s appointments, tests, surgeries and more doctors. At the time, I was focused on getting through treatment, spending time with my kids and making sure they were ok throughout the nine months I spent beating this disease. (They did just fine BTW.) During my recovery, I became an outreach coordinator for FORCE, and I loved the help I could provide to people. At the same time, I was also focused on raising money for a different cancer organization.

Fast forward seven years to my yearly post cancer check-up with my oncologist and things had changed. My oldest was well into her teens. I was chatting breezily with my doctor as he conducted my exam. We talked about the progress and changes in hereditary cancer since my diagnosis, the awareness, the additional drugs available, the research, the testing. I knew, in my heart, that all of this progress would make a difference for my daughter but hearing those words spoken from a man I’d grown to admire and trust with my life struck a chord deep inside of me.

That’s when I decided to devote more to FORCE. I’d spent the previous seven years admiring the work that the team at FORCE had accomplished. I watched proudly as they fought for our rights and protected us through their amazing advocacy work. I watched them help to fill clinical trials with members of our community to ensure that newer and better drugs could come to market. And I watched as they developed programs to support men and women of all ages as they dealt with the blow of a cancer diagnosis or the realization of a gene mutation.

Photo of Ellyn with her family

Davidson family

I was blown away at the work of this team but I was no longer content sitting back and watching. I was eager to participate. I joined the board and for the past two and a half years, I’ve had the distinct pleasure of serving as the president.

The work FORCE does is making a difference in the lives of every person impacted by hereditary cancer. Like many non-profit organizations, FORCE has a very small budget for the level of impact we have in the community. We rely on the generosity of donors, peer-to-peer fundraising and grants to support our mission.

I am so thankful to all of you for supporting this organization, for the team that works day in and day out on our behalf and most importantly to Sue Friedman who decided in 1999 that no one should face hereditary cancer alone.  Mostly, I’m grateful that my daughter Lacey will never, ever have to go through what I did.

Ellyn Davidson was 36, the mother of a toddler, a Kindergartner and second-grader when she was diagnosed with breast cancer. Now a ten-year survivor, Ellyn is an active breast cancer fundraiser, Board President of FORCE and the new owner of Brogan & Partners, an advertising and marketing communications agency based out of Birmingham, MI.

4 Comments

  1. Jodye Glick says:

    I am also a BC survivor of over 10 years. Congrats to US! But I’m not seeing how your daughter will never have to go through what you did? Force was the only life line I had during those first months and years. I appreciate everything they were able to provide me with, but Force didn’t help my 30 year old daughter from having to go thru a preventative double mastectomy and at 43 a hysterectomy. I am grateful that my daughter will (i pray) not ever have to deal with cancer and I am also grateful for her ability to be able to access these surgeries as a pre-vivor.
    Currently my brother has been diagnosed with BC and is going through chemo. His daughter is 21 and he feels that she doesn’t need to be tested because there will be a cure for breast cancer soon. I have tried everything I know to get him to be realistic. I have sent my niece information directly. So, I was taken aback by your letter. Again, why won’t your daughter have to go through this if she tests positive?

    • Ellyn Davidson says:

      Hi Jodye,

      Thank you for your comment. Congratulations on 10 years. You bring up some very interesting points, and I am sensitive to the fact that everyone comes with their own set of emotions surrounding this very difficult topic.

      For me, thinking about our future generations, I am incredibly hopeful with the progress being made. I don’t believe that there will be a cure for cancer in the next 10 years but I do believe that diagnostics will continue to improve, new medications will emerge and preventative surgeries will become more manageable. My daughter will have genetic testing when she is ready (likely in her mid- 20s) and thankfully she will be armed with great information to allow her to choose preventative surgeries and increased surveillance. While I know these surgeries are nothing to take lightly, it’s much different than the emotional and physical toll of a cancer diagnosis.

      I’m sorry that your brother does not feel your niece needs to be tested. I completely feel your frustration and hope that as she approaches her mid-20s, she’ll change her mind and decide to be tested.

      I don’t have a crystal ball to know what the future holds but I do feel confident that should my daughter test positive for the same BRCA mutation I have, she will likely go through surgeries but she will not endure the emotional and physical toll that I did at 36 years old.

      Thank you again for reading and taking the time to post a comment. Please know that I would never want to upset or offend anyone with my words, and I hope I’ve clarified my meaning behind those words.

      I wish you and your family good health.

      Ellyn

  2. Teri Miller says:

    While your daughter is considerably safer, she is in no way “safe”. Let me explain.

    When I was almost 8 yrs old, my grandmother died of breast cancer. At about 16, her sister also died of breast cancer. At age 17, I faced my own scare, the first of many benign fibroadenomas which would plague my life. In approx 1991, I was seen by a breast specialist who first told me about BRCA testing, but he felt the testing was not wise until protections were put into place. By 2003, he felt comfortable in advising me to consider testing. My mother had been diagnosed with a rare form of Ovarian Cancer a couple of years before. She had also lost two cousins and a second cousin from the same family and another cousin survived BC. So something was up in the family.

    I received genetic counseling and I was advised to get my mother to test first, as she had cancer and the testing would be more informative for the family. She refused, saying she was afraid it would harm her under-insured children or self-insured children, should she be positive. I tried to reason with her, to no avail. She died without testing.

    When her brother died of Prostate Cancer (a possible BRCA cancer) I decided to test. My result came back with a BRCA 2 mutation. So began my journey.

    I spent the next two years in prophylactic surgeries and reconstruction. I had my final reconstructive surgery in Feb 2015 and had made arrangements for my 3D nipple tattoos for the following October. In September 2015, I went to a baby shower for my daughter’s friend . It was an outdoor event, warm outside, and food sat out. I began to have gastric issues and thought I had a touch of food poisoning. I was told no one else was sick, however. A few days later, my stools lost color so I looked up what the problem could be. The info said to go to the doctor if it didn’t change in a few days. It didn’t so I made an app with my GP who immediately referred me to a
    gastroenterologist in a larger city. I knew pancreatic cancer was a possibility as a BRCA 2 carrier, albeit a small possibility. The GI doctor knew nothing about the BRCA-PC connection and he began to research things. Unfortunately, he was guided away from PC by trial results out of Johns Hopkins. Plus, my CT was negative after four months of tests. More definitive tests were not done as it was felt they could do more harm than good. I do not smoke and rarely drink, btw.

    The professionals continued to insist I did not have PC. I made the mistake of not going to a large city, teaching hospital for a second opinion. Instead, I accepted the “we may never know” opinion while making arrangements for a second opinion in August 2016. I’d be dead if I had PC after 8 mos, right? Wrong. By late June of 2016, my body went nuts and my labs were crazy. Still, it was thought to be something else but I was scheduled to do the tests that were refused in January. So, on my way to my five week beach vacation, I stopped for this quick test. Deep down, I knew it could be PC but no one else believed me.

    I awoke to being informed it was Pancreatic Cancer and my vacation was cancelled. It was small and I was staged at a IIish. I was given a 50/50 chance for 5 yrs. I was started on neo adjuvant chemo, which shrunk the tumor, and when in for a Whipple, which had to be aborted when it was discovered the tumor attached to a vein. After recovery, I was put on chemo/radiation, which appeared to have worked. In May of 2017, I had a second Whipple attempt, which was successful. Unfortunately, three of fifteen lymph nodes lit up, which was worrisome. By Sept 2017, my CA 19-9 spiked and I knew the cancer had spread. An MRI located 6 met in one lobe of my liver.

    Around the same time, the results of a molecular study of
    my tumor proved what I always believed. My cancer was related to my BRCA 2 deletion. I had been put on Gemzar/Abraxane, which is currently working. However, it only works a few months and, knowing this, I went looking for a trial of PARP inhibitors, hoping to get into the POLO trial. I found the only facility still accepting patients in the West was at Banner MD Anderson near Phoenix. So my husband and I traveled there, hoping to get me into the trial. Unfortunately, because of the choice of chemo regime I had been put on most recently, I did not qualify. But the Pancreatic Cancer doctor there was able to get the drug approved off-label, which is even better. I begin the drug, Oliparib, in the next two weeks. Fingers crossed it works well.

    I tell you this story to inform, not scare. Just be aware. Pancreatic cancer is a risk to those carriers of the bad BRCA genes, especially BRCA 2. It is very tough to diagnose with current tools, although in my case, tests were not used. Prophylactic surgery does not protect you 100% but it is the best we have at this time.

    Bottom line, listen to those little voices. I had them. I ignored them, trying not to look like a nut. Deep down, I knew it was PC. I allowed months to be wasted. I knew to get a second opinion from a teaching hospital. Learn from my experience.

  3. Ellyn Davidson says:

    Hi Teri,

    Thank you so much for taking the time to share your story. You are absolutely right about listening to those voices in your head. Sadly, no matter how much any of us do to protect ourselves, take care of our bodies and make the best choices, we are still not immune to disease and tragedy. I am so sorry to hear about what you are going through. I will keep you in my thoughts and prayers. Sending love and strength to you.

    Ellyn

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